Is it normal to look like there is no... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Is it normal to look like there is nothing wrong with you even your on a stage 4 lung cancer and being treated by chemo?

Ayah profile image
Ayah
18 Replies

My mom has a lung cancer and doctors says she's already on a stage 4 thats why she needed to be treated by chemo, we've have 2nd,3rd,4th opinion in different hospitals by the different doctors... june 25 will be her 6th times of chemo, and we don't know yet what will be next. everyone is wondering that if shes really on a stage 4 of a lung cancer, how come she looks so fine and normal despite of her situation, aside from she get's tired easily, maybe because of the chemo, Is it really normal to look like there is nothing wrong with you even your on a stage 4 of lung cancer? Im not ever sure if she even lost weight. anyone with the same situation with my mom?

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Ayah profile image
Ayah
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18 Replies
suesal123 profile image
suesal123

Hi,

I am a 52 year old lung cancer patient with stage 3 inoperable lung cancer. After being on a targeted therapy for 7 months and now on IV chemo (4th round tomorrow) I understand exactly what you mean. Apart from a couple of days after the chemo, when I feel tired, I am otherwise fine and continue to do the same job I always have. I don't feel very different myself physically and when any of my friends/work colleagues discuss my situation they all say they can't understand how I look so well. That's got to be a good sign and hope your Mum continues to be well

Sue xx

Ayah profile image
Ayah

I' sorry to hear that you are almost the same situation with my mom, i pray everyday for all the cancer patient. I am really praying for a good result of her 6th chemo next week and you'rs as well. Stay strong and continue beinh positive for the good result

Aya

LorraineD profile image
LorraineDPartnerRoy Castle

Aya

This must be a worrying and confusing time for your family. It can be difficult to understand an illness when the signs are very difficult to see. People do vary tremendously in how they feel and cope with their illness. It may in part be due to the location of her tumour, which might not be affecting her breathing. Your mum's resilience will be a good resource for her during chemotherapy and any follow up treatment. if you are looking for more information we have a booklet called Lung Cancer Answering Your Questions and a DVD titled Living with Lung Cancer. These can be sent free of charge to you or your mum if they might be useful. For more information look on our website roycastle.org or call 0333 323 7200 option 2.

I hope you had your family are coping,

best wishes

Lorraine

on behalf of the Information & Support Team

waterfd profile image
waterfd

Chris my wife is also stage 4 with Mets she has had 5 cycles of chemo and she has been really ill all through it after the 3rd cycle. She was on Cisplatin/Pemetrexed for 4 cycles and because of the side effects she is now on Carboplatin/Pemetrexed for the last 2 cycles. She has also had whole brain Radiotherapy so I think this has not helped with her symptoms. Before being diagnosed with this she was fit and was still working at 62. The treatment has really knocked her about quite a bit. CT scans are showing good results.

So I think depending on your treatment will dictate how you will feel.

He'll Chris, I too have been diagnosed with stage 4 inoperable lung cancer. Last year I went through endless rounds of IV chemo using Avastin, carboplatin & pemetrexed. My profile photo was taken after after 5 rounds of chemo. This year the oncologist is trying IV chemo of gemcitabine & carboplatin. I'm even more tired but still look the same. All my friends comment constantly that I don't look any different & even I can't believe I have cancer. Sometimes I want to scream 'but I feel horrid' when suffering side effects & other times I welcome the comments. Everyone reacts differently. There seems to be no set pattern. I wish your mum the very best & hope her future chemo sessions & future scans prove positive x

Ayah profile image
Ayah in reply to

I am very sorry to hear about your condition~ i may not know exactly how much pain you are dealing physically, but i know the pain mentally and emotionally. My dad just passed away this year and knowing that my mum is fighting for her life..., really kills me and break my heart:( i should be on her side everyday, but i have to work abroad so she can have all the treatments to save her life, and give her everything i can give. She's been here in japan for 2 weeks a couple of weeks ago, because she wanted to have a vacation, she wasn't really active to go here and there, but i know that she was very happy to be with me.

I pray for the best result after her 6th round of chemo next week, and for every cancer patient. Keep your faith and i know god will hear your prayers.

Harrypalmer profile image
Harrypalmer in reply to

Hi Lulla, you look great girl. I'm also on Carbo/Pemetrexed but what is avastin. I've already had four rounds of Cisplatin/Vinoalbine last year which didn't work so now am stage IV as it's spread to other lung. Like you the worst symptom is the fatigue for 4-5 days. I'm meant to have four rounds with a ct scan between round 2-3 and I suppose if there is no shrinkage then they'll try another type of chemo, but if two don't work why should another one.? Keep well. Moni x

Ayah profile image
Ayah

I am very sorry to hear about your condition~ i may not know exactly how much pain you are dealing physically, but i know the pain mentally and emotionally. My dad just passed away this year and knowing that my mum is fighting for her life..., really kills me and break my heart:( i should be on her side everyday, but i have to work abroad so she can have all the treatments to save her life, and give her everything i can give. She's been here in japan for 2 weeks a couple of weeks ago, because she wanted to have a vacation, she wasn't really active to go here and there, but i know that she was very happy to be with me.

I pray for the best result after her 6th round of chemo next week, and for every cancer patient. Keep your faith and i know god will hear your prayers.

I apologise profusely calling you Chris. Had just got back from a chemo session and one thing I have noticed, it gives me 'chemo brain full of mush!'

Regards, Tallulah x

AmyKB profile image
AmyKB

God bless your mum ... We are about to start treatment I think for my mum (stage 4 NSCLC) ... Not sure what to expect

robber12 profile image
robber12

Hi Ayah. I have stage 4 with bone mets. I have been on Tarceva for nearly 4 months now and have had 1 dose of radiotherapy. The tumour has shrunk but the bone mets have increased in size and number. They have told me I am still terminal. My breathing is fine now but the mets are starting to hurt again. I am 52 with a loving wife and kids and this is breaking our hearts. I too do not look that ill but inside I am really poorly. I feel really tired and sick at times but I think this is a mixture of cancer, Tarceva and morphine. I wish you and your family all the best. Live for today and make every moment count.

Regards. Rob..... x

LorraineD profile image
LorraineDPartnerRoy Castle in reply to robber12

Rob

Thank you for sharing the good advice. I hope you are keeping well and that you have found tarceva manageable. Glad to hear your breathing is better but not so great news on the mets. Hopefully the radiotherapy treatment will assist with this. The Nurse Specialist may be able to offer additional suggestions in terms of pain management.

I hope you and your family are coping with the difficult situation you find yourself in and that you are getting as much support as you need.

Best wishes

Lorraine

on behalf of the Information & Support team

EvaSamantha profile image
EvaSamantha

Hi Ayah .. couldnt believe it when I read the title of your post. Ive been asking myself this question fir the last 3 weeks.

im 45 and was diagnosed with advanced terminal lung cancer on 31st October.

i dont think ive ever been healthier.

What is happening on the inside is definately not manifesting on the outside.

I have had two weeks of chemo therapy which has already even reversed somewhat my one and only sympton (a husky voice).

I keep expecting Jeremy Beadle to jump out and tell me its all been a huge joke.

i just cannot believe im really this ill.

all its very very odd.

Peterkin102 profile image
Peterkin102

Dear Ayah my wife 53 already a year exactly stage 4 with brain mets and she's well with no symptoms at al.

but we know deep inside it could be a time bomb slowly fusing to explode. We hope and pray everyday for complete healing. We wont look at statistics but we are not in denial.

Peter

emilyt36 profile image
emilyt36

Hi all

My mum was diagnosed in Dec 2012 with Stage 4 Lung Cancer and bone mets she had radio to spine and Cistplatin/Pemetrexed and Carbo/pem Chemo 4 x made her quite ill, some small shrinkage then growth so she moved on to Tarceva which shrunk tumors to scar tissue and gave her life back she was very active, in march she had a scan which showed new mets in the Liver so she had a biopsy and has been moved to the Prof of Oncology to go on to a trial, after 8 weeks off Tarceva they have put her back on until she starts a trial and it seems to be improving the lung a bit. We are hoping to move to a drug called AZD9129 but she has to wait for a blood test to come back to see if she has a gene called TC790 first if not we will start another trial. There is so much out there at the moment so we remain very positive, although she is struggling a little with the current progression and the pain we continue to love and laugh, Good Luck all

x

ranger47 profile image
ranger47

hello ayah i have stage four lung cancer and sometimes i think theyve made a mistake i have no pain am putting on weight apart like you say feeling tired i also put that down to chemo i look as if theres nothing wrong with me.

leannebennett profile image
leannebennett

So sorry to hear about ur mum but from my experience with my mum 2 months ago yes u cud luk n b as healthy as a fiddle on the outside my mum had lung cancer no 1 new uno a week b4 it literally just tuk ova her body she must of had it for years it's spreaded 2 her liver n throat that's a stage 4 lung cancer wen it spreads from 1 part of the body 2 anuva my mum was diagnosed wiv it on a Tuesday came home from hospital on that Fri n past on the Monday after but wot baffles me is that they sent her home wiv just paracetamol :-/ I don't get it n still haven't got my answers till this day buy the answer 2 ur question is yes they can act n luk so normal xx

JanetteR57 profile image
JanetteR57

What a good question and shows how we're preconditioned due to media coverage of cancer patients that there must be a certain way to look, pale wan, no hair etc - but that's often based on outdated treatments and some of the different targeted agents and chemo used for lung cancer don't affect people in the same way although clearly the aim is for the inside to be blitzed with the treatment. Also often when it's portrayed on tv with people coughing up copious amounts of blood, that's more akin to TB/consumption when it was everywhere in the 20th century as very few patients actually have that symptom even though it's the one most often quoted and why the 'be clear on cancer' campaign focused on a longstanding cough, fatigue, breathlessness to raise awareness of other symptoms.

I've had that comment so many times especially as I was fit when diagnosed in Jan 2011 and continued an active life since although sometimes floored by chest infections that mean I'm hospitalised with breathing difficulties... mine wasn't stage iv but 2b and I had half my left lung removed. however weight gain always prompts comments about looking well without people understanding that often this is due to steroids rather than what my body has responded to.

I guess it means we all have to rethink our perspective of what cancer patients look like and how they want to be considered - I do everything possible not to appear ill even when hospitalised by avoiding contact with others or letting others know (before the pandemic) so that a 'stronger' image is believed... I don't think I'm the only person to do that to protect loved ones who would be over anxious yet unable to do anything to make a difference (or that's my belief at the time).

People react differently to the treatments dependent on any other conditions, medications or fitness beforehand too and it's one reason why the UK lags other countries with lung cancer outcomes as the majority of patients are diagnosed at stage iv. Often people feel unwell or not quite right but don't seek medical help as they can't put their finger on what's wrong or the doctor assumes, given their appearance, that it can't be anything serious.... We have to find ways to understand who may be more likely to develop lung cancer in future for earlier detection and more treatment options.

In the meantime, hope she responds to her treatment well - some stage iv patients I know are still doing fitness activities like running, cycling and it was due to their impaired fitness in the first place that they sought help.... good luck to you both.

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